Sogger’s Blog

It’s been a while since I wrote about epilepsy which seems remiss given that this is the reason I created this blog in the first place. I want to give you an update before a visit to the neurologist later this week so you can see what a lengthy process it is just trying to get the dose right, and the implications of not doing getting it right.

I last went to see him 2 months ago armed with the results of a brain scan, a bad reaction to the generic version of Lamictal and a disappointing reaction to the last random mix of medication (do you sense a hint of resignation?). He added a new tablet into the mix this time: Tegretol. He started me off on 200mg a day, with a prescription for 400mg if it didn’t work out.

It seemed a god time to start a new medication because the following week we were off on holiday for a week and I would not have to worry about serious side-effects happening in front of my colleagues (collapsing, that sort of thing) and the awkwardness that would ensue. My pharmacist was worried about me though (that’s a positive side-effect of constant pill-taking - you get to build relationships in unlikely places), suggesting that the thin air in the mountains might be a problem for someone like me (I’ve never seen anything on the web about people suffering from increased seizures when at altitude. That said, I haven’t read many success stories of the type, “Epilepsy Sufferer Conquers Everest”).

So off we went skiing, armed with sunscreen and a shiny new collection of pills. All was fine (apart from me falling over and ending up in hospital for X-rays). The week after, and back at work, it was back to the old routine: stressful meetings followed by seizures, lasting from a few seconds to a few minutes (the seizures, not the meetings unfortunately), endured in private or endured by my wife who generally has to talk me through it. After a seizure a day (”keeps the doctor away”…err, no, that’s not right), I decided to up it to 400mg a day. “Ah, I told you so - mountains and epilepsy don’t mix”, nodded the pharmacist, sagely but incorrectly.

That did the trick for the weekend - no seizures, but an inconclusive result, given that I wasn’t at work, and playing football with the kids has never been a seizure trigger (for me). But wait a minute what’s this (apart from beginning a sentence with a preposition?)…those blotches on your fingers are getting quite widespread and are very, very itchy, as are your back and legs. Now, my fingers are extremely painful and the effect seem to correspond closely to the side-effect described as “cutaneous eruptions”, even if the list of possible side-effects, as for most epilepsy medication, is 2 pages long. And my legs are no longer itching: they are extremely painful given that I have scratched them so much that they are bleeding.

These are mere side-effects, the main point is that they stop the seizures, right? Well yes, that’s the idea. Except, well, no, they haven’t. They seem in the short term to have stopped the seizures I was having at work that I put down to stress, but, in the meantime I have taken to cycling to and from work, and, every night last week, at the same point on the route home, I have had my often interesting and not always unpleasant jamais vu seizures. For those that don’t know, jamais vu is the sensation of feeling that you are somewhere new even when you are somewhere you know intimately. For example, in the past, I have had this sensation while trying to find my way back to the bedroom from the bathroom (luckily not in the other order) and I also wrote a similar episode here. In this case, for example, I got to a roundabout I pass every day, but I didn’t recognise it and had the feeling that I had taken a different route home - I knew it was the right way because I was on my bike, cycling home, and knew I was having a seizure. Stopping for a minute, it passes, and I can get on my way again. The downside of this is that it leads me to feel tired and irritable afterwards (although these are two characteristics that are often attributed to me anyway).

The positive side of this latest batch of seizures is that it confirms that I have two common triggers: stress and hyper-ventilation. So all I need to do to be cured is to do is avoid working and stop exercising! Unfortunately, it’s not as clear-cut as this, so I guess the neurologist will be prescribing another cocktail - don’t get me wrong, this is completely normal as no two person’s symptoms are identical - and even mine are difficult to pinpoint.

Watch this space as I write again to regale you with another set of bizarre reactions. If I can remember where I left my laptop, that is.

This entry was posted on Sunday, March 30th, 2008 at 10:15 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.